My Updates

APRIL UPDATE

In the month of April there were two events that took us out of the routine of our busy lives. One was good: the princess Courtney celebrated her 5 years with a great party and Hayron, our son, danced with her to a special song; the other event was bad because our son had a fracture in his right leg, 3 days before the celebration.  

 We first met Courtney at her 4th birthday party. When we moved to Texas, in August of the year 2006; Dalia, the coordinator of the MDA clinic in Houston, put us in contact with the Rosas family because this was the only family near to us that had a relative with SMA type I. Until that moment I had never wanted  to have contact with families with sick children because it was too sad for me. I used to see kids like my son when we would take him for neurology consultations. I should be strong to be able to take care of my son and for that reason  I avoided all the negative thoughts. On the other hand, I accepted the chance to get to know the Rosas family and I believe I made a good decision. 

 Although we had communicated through e-mail and by telephone, the illnesses that we had and the busy days, it  prevented us from meeting until April of 2007.

 The Rosas family was wonderful. From the first moment we appreciated that they took care of Courtney in a very similar way as we do our son. It was a united, simple and optimistic family, although behind their smiles they hid that sadness that all the relatives of children with SMA have. We began to share experiences about our angels through trips, visits and e-mails and after exactly one year, we love Courtney and her family and consider them as friends. To enter to the princess Courtney’s  small and pink palace  makes you feel a "strange peace" and I call it "strange" because I don't believe that neither the Rosas family or our family have calm lives with so many possible dangers with our kids. 

 The first encounter between Hayron and Courtney was short. It was the birthday party and there were several guests present.  In spite of this, both our families took some very special pictures that will always be in the first pages of our album of memories.  The impact that the beautiful one with red hair had on our Hayron, we discovered with in days because when we mentioned the name of Courtney, he smiled in a different way.  Hayron is romantic, he loves the stories about  princes, princesses and happy endings, for that reason the beautiful princess was exactly the friend that he needed. 

Courtney is older; Hayron is 8 months younger than she, he is male and she is female, Hayron's primary language is Spanish and Courtney's is English, but both love each other and they feel happy when they are close. 

Candace and Linda, mom and grandmother of Courtney gave my son the privilege of dancing with their girl a song (You´ll be in my heart) that would be the song of both and symbol of their friendship. We feel very grateful to them for giving us the possibility to complete the dream like all parents, of seeing their son courting a beautiful girl in her "Quinceañera", that is the most important party for all girls. In this case the happiness was superior  because she is not a common lassie, she is a princess; and on the other hand our son, our hero would dance to that special song at the age of 4 years. ! Incredible! 

Just 3 days before the party we  noticed, at bath time that Hayron had the inferior third of his  right leg deformed . Everything indicated that he had a bone fracture, that is one of the complications of Spinal Muscular Atrophy. We always tried to avoid any unusual or sudden movements for fear of a fracture. We are always very careful while moving him to his side and when our son stayed in the hospitals, so that any  nurse or doctor would not move Hayron improperly. 

We went to the emergency room and after a long wait there all the while aware of all the risks that the SMA  kids have when they enter a hospital (that only the parents of these children  know really), we were confirmed with the feared diagnois, he had a tibia fracture!. The doctor put a transitory plaster on Hayron's leg all the way to the thigh, they made an appointment with the orthopedic doctor for  one week later.  

My mother Wilda, Hayron's grandmother, flew here immediately to help us in this difficult situation, because Hayron would need two people to take care of him, being careful that the weight of the plaster would not hurt his hip.  

A week later we went to the orthopedic appointment and the plaster was changed for another shorter one that only goes up to the interior part of the knee. From then, our boy has been improving, although it is necessary to be more careful with him so that he doesn't feel pain or have another complication. The one thing  we worry about is the skin below the plaster, because he has delicate skin and there he could get ulcers, which would be dangerous for his condition. 

 As I already said, the party would be 3 days after the day the fracture happened, and before having changed to the second plaster. Our attendance to the party would not be safe, but because of how happy Hayron would get when we spoke of Courtney's party, we decided that the best thing was to give him that happiness. Hayron is superfriendly and he loves to be surrounded by people. I dressed him in his impeccable white suit and immediately all the uneasiness abandoned him and he was excited about the party. 

Relatives, friends and volunteers made reality a dream. Courtney glowed in a long white dress and it illuminated the ballroom with its own light. We shared the happiness with the Rosas family, being proud the beautiful princess survived to celebrate 5 years. You could feel the harmony amid so many wonderful and charitable people. We met again with Dalia, the coordinator of the MDA clinic, after almost 1 and a half year without seeing her. She was the one that took us to our first appointment in the clinic when we arrived in Texas and she was our guide that day, because we felt lost in the new hospital. Dalia was also the one that coordinated a special bed for our son, that he still uses. It was possible for us to be there that day next to Courtney because of Dalia. She was very happy when she saw Hayron and  surprised at what a big boy he is. She also told us that she would continue to help us if it was necessary. 

We also saw Tania Elizalde again, we had met her for the first time when we went to the ballroom for the one and only rehearsal for the dance that Courtney and Hayron would share. She and her family donated the ballroom, food, pictures, etc.  It was rewarding to know people who are so good and able to help those in need . 

Two television stations; Univision and Fox 26 of Houston were there at the party. The first one interviewed my husband and father of Hayron, because he speaks Spanish and  because he is an affected child's father.  I must say that the grandfather of Courtney also speaks the Spanish language.  Manuel, the dad of Hayron talked about the illness, the importance of the fight to find the cure and of the miracles of life that happen when the affected children are given affection and good care.  Candace and Linda spoke with  Fox 26.

 A representative of the local newspaper was there. The journalist, on one previous occasion had written about Courtney's history in a column of the newspaper. 

 The princess's friends, the South Houston Fire Fighters, were there to celebrate with their girl and they danced around her to a beautiful song. Hayron was impressed with them and since that moment also considers them his friends. They sounded their siren, but it wasn't the same way as the other occassions that Hayron had heard sirens, todays sirens were sounding for the 5 years of the party's princess, and my son didn't stop laughing and opening his beautiful and expressive eyes. From that day, he makes sounds when he hears that  sound at our home; it no longer causes in us the fear and repulsion that we felt when remembering that once, a similar sound, came to pick us up from our house to take us to the hospital, because Hayron was gravely sick.  

Dance, pictures, videos, interviews, happiness, lights, tears, pride, memories, future….., the miracle that Courtney turned  5 years, and the other miracle that my son Hayron, my hero,  was accompanying her with 4 years, 3 months and 23 days.